Why Many HIV-Positive Women Choose Basic Survival Over Treatment

Shyronn Jones, 41, says that she lives with an overwhelming cloud of stress every day. She says a lot of it stems from insecurity over maintaining stable and affordable housing, being able to find affirming work that can help her pay her bills, and having the means to provide for her children.

“There’s just these daily stresses based on my income. And when I think about the physical stresses, it’s just so evident: My memory, my speech, even me relaying words, is just deteriorating,” Jones, who lives in Atlanta, told Healthline.

“My memory, it’s just so cloudy. My mind is so full of worry and stress and anxiety. I can’t even remember if I took my medicine or not,” Jones said.

For Jones, this persistent sense of anxiety can make her own health take a back seat. She received an HIV diagnosis when she was 22. Since then, her life has become a juggling act between managing her health, being a mother to three (she’s raising a 7-year-old daughter and 16-year-old son at home and also has an adult 21-year-old son), and serving as an advocate for women who are living with HIV through Positive Women’s Network – USA, a national group of women living with HIV and their allies.

Over the years, Jones has become a vocal presence in the Atlanta area, speaking out about many topics close to her heart and experiences related to HIV, from racial disparities in housing and healthcare to sex education.

While this has been an enriching experience for her, there hasn’t been much time for herself.

“It’s been on my mind to get a full-body massage. My whole body is in pain all the time, it’s really extreme. I found a place that is $40, and it’s so hard for me to spend $40. I would like to go on a vacation; [I] would like to go on a cruise. I think about trying out, like, yoga and taking a swimming class, because I would like me and my children to learn how to swim,” she said.

“Those are just some things I have on my mind that I want to do. I would like to ride a horse with [my kids]. There are a lot of things I want to do.”

This struggle with finding the time to take care of herself and her health is one that Jones shares with other women who are living with HIV.

The struggle to maintain viral suppression

Last month, a studyTrusted Source in JAMA Network Open revealed that, in general, women with an HIV diagnosis find the practical realities of day-to-day survival take precedence over maintaining and managing viral suppression of their HIV.

The researchers looked at data of 1,989 women enrolled in the Women’s Interagency HIV Study (WIHS). They were observed from 1994 to 2017 at sites in Washington, D.C., Chicago, Brooklyn, the Bronx in New York City, and San Francisco.

The study identified three trajectories of viremia, or the presence of HIV in the blood, in these women. About 28.6 percent had the probability of maintaining low levels of viremia, 39.4 percent for intermediate levels, and 32 percent for high levels.